“We live as good a life as we can, in the situation we’re in” – the significance of the home as perceived by persons with dementia

Abstract

Background The coming years will see more persons with dementia living longer at home. However, “the home” is a complex concept with a multitude of meanings, varying among individuals and raising ethical and practical dilemmas in the support provided for this group. This study aims to increase the understanding of experiences and attitudes among persons with dementia related to living at home. Methods Qualitative interviews were conducted with 12 persons, 69 to 89 years old, with a dementia diagnosis and living at home. Using a hermeneutical approach, the interviews were analysed as single texts, as parts of a set of texts and as a whole single text. The writings of care philosopher Kari Martinsen on “The home” were chosen as a framework for the theoretical interpretation of the findings. Results The participants experienced a vital interconnectedness between the home and their lives, placing their home as a core foundation for life. Through stories of persisting love, they illuminated how their lived lives functioned as a foundation for their homes. Further, they described how progressing dementia disturbed rhythms of life at home, forcing them to adapt and change their routines and rhythms in life. Finally, in the hope of an enhanced future home the participants showed an acceptance of, but also a reluctance to, the prospect of having to move out of their homes at some future point. Conclusion The study suggests that the participants’ home generated existential meaning for the participating persons with dementia. Their experience of being at home was based on a variety of individual factors working together in various ways. These findings imply a need to understand what factors are important for the individual, as well as how these factors interact in order to provide support for this group of people.

Reform influences location of death: Interrupted time-series analysis on older adults and persons with dementia

“…Despite past studies finding death at home being the primary preference [ 26 – 28 ] and policy goals to enable home deaths, we found that there has not been a change in home deaths over time. Kjellstadli et al [ 29 ] found in a population-based, longitudinal analyses, that general practitioner (GP) home visit(s) and interdisciplinary collaboration(s) in the last 3 months before death, significantly increased the odds of dying at home in a dose-dependent manner.…”

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study

“…The remark about finding an answer to the question ‘What’s important to you’ in the persons’ narratives illustrate the importance of finding room for such conversations between coordinator and person with dementia. An open approach in these conversations may further help the coordinator gain insight in the persons’ rhythms of daily life at home [ 33 ]. However, we found that it proved challenging for the coordinators to pursue this objective throughout the intervention period.…”

Exploring the contribution of housing adaptations in supporting everyday life for people with dementia: a scoping review

“…Within the included studies, there was a belief that changing the physical home environment would make no difference (review question 3). This finding is in sharp contrast to the wider literature which establishes a relationship between the environment and wellbeing for people with dementia living at home (Forsund et al, 2018;Gitlin and Hodgson, 2018;Bartlett and Brannelly, 2019). Whilst the likelihood of being disabled and/or experiencing multiple chronic and complex health conditions increases with age (Office for National Statistics, 2018 cited in Age UK, 2019), appropriate housing (including adaptations) can support older people to stay healthy and live independently for longer (Adams and Hodges, 2018).…”

“…The scoping review (review question 3) also found that carers were reluctant to make changes if these would cause confusion or irritation in the person with dementia. In the generic literature, Faeø et al (2019: 3) refer to 'the disturbed rhythms in life at home' because often problem behaviours identified at one point in time may not be the most distressing a few weeks later (see also Gitlin et al, 2010). Within the included studies, there was a belief that changing the physical home environment would make no difference (review question 3).…”